People & Culture

Community Spotlight: National LGBT Cancer Network

December 17, 2021

Syros is proud to shine a spotlight on our nonprofit and patient advocacy organization partners that provide valuable support and services to their respective communities.

Working to improve the lives of LGBTQ(IA+)  cancer survivors, patients, and those at risk

An estimated 81,000 LGBTQIA+ people are diagnosed with cancer every year. LGBTQIA+ refers to people who are lesbian, gay, bisexual, transgender, queer, intersex, asexual, and/or those who identify with other terms. A cancer diagnosis is often made significantly more stressful and terrifying for LGBTQIA+ patients due to fears of stigma and discrimination in the healthcare system.  Reports show that systemic homophobia as well as transphobia in the healthcare system significantly impact the quality of care LGBTQIA+ people receive.

The National LGBT Cancer Network recently released its findings from, “Out: The National Cancer Survey,” the largest-ever LGBTQIA+ cancer survey of its kind.  The report found the following:

  • Among those who disclosed their LGBTQI+ identity, gender expansive survivors were 3x as likely to report their care as less welcoming afterwards compared to cisgender survivors.
  • Respondents reported feelings of social isolation increased dramatically for LGBTQIA+ cancer survivors from 15% to 82% since the start of the pandemic.
  • A majority of respondents (58%) felt that tailored resources on cancer survivorship are important, but few have access to such resources during their cancer journey.
  • While 83% of respondents reported being able to find helpful information about their cancer, only 13% found information specific to being a LGBTQIA+ person with cancer

These findings from 27,000 LGBTQIA+ cancer patients and survivors illustrate how their voices are often lost in the conversations about cancer care. Cancer has indelibly left a disproportionate mark on LGBTQIA+ communities. The National LGBT Cancer Network recognizes that these cancer patients and survivors have important stories to tell, and it is necessary to uplift their voices and validate their experiences. Founded in 2006, this is the first and only nonprofit to address the cancer-related needs of lesbian, gay, bisexual, transgender,  queer, intersex, and asexual  people. Syros is proud to support the National LGBT Cancer Network in their mission to ensure that the only thing a cancer patient should have to worry about is getting better. No one should feel scared about being treated differently because of who’s holding their hand as they wait for the doctor to arrive.

Education, Training, and Advocacy

Not much is known around LGBTQIA+ and cancer because the subject is often underfunded and under-discussed. To combat these challenges and help change the way the healthcare industry thinks and acts towards LGBTQIA+ communities, the National LGBT Cancer Network has implemented programs centered around three main pillars – education, training, and advocacy.

Education: The organization educates the LGBTQIA+ community about increased cancer risks and emphasizes the importance of early screening and detection to catch cancer early. 

Training: The trainings offered to healthcare providers aim to create a more culturally competent, safe, and welcoming environment. These programs have been rolled out to thousands of healthcare providers with funding from the CDS and other national and state organizations. Based on the results from “Out: The National Cancer Survey”, the organization is working to publish the findings, create community briefing sheets, and develop presentations, trainings as well as new best practices for practitioners.

Advocacy: The organization aims to be an advocate for all LGBTQIA+ patients and survivors to encourage conversations in mainstream cancer organizations, the media, as well as in research. 

Increasing awareness about the dipropionate issues these patients and survivors face is essential so that LGBTQIA+ patients don’t have to choose between treatment and their identity.

Dana, a patient advocate who is living with recurring ovarian cancer and identifies as non-binary says, “My doctor reached out to one of his colleagues as well as my oncologist and together they told me firmly that I could not have      top surgery because there was no research, and they didn’t have an understanding of the long-term impact.”  Fortunately, Dana connected with the National LGBT Cancer Network and was able to find a support system      and have made meaningful and life-long connections.

The organization is truly making a difference in these cancer patients’ and survivors’ lives by providing a safe community, advocating for welcoming care, and providing resources that no other organization has to offer.

Looking Ahead

The National LGBT Cancer Network has accomplished a lot in the past 15 years, but there is still more to be done. The organization continues the quest to eradicate LGBTQIA+ health disparities and achieve equal access to high quality healthcare and cancer care for all.

Learn more about the National LGBT Cancer Network’s mission, current projects, and see how you can get involved.